Tag Archives: discouragement

Isolation

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tree-738816_1280I just got home from spending 6 weeks in CA: it started out as a trip to be with my kids for their middle school and high school graduations, then turned into a longer trip in order to go through my storage and try to find a way to get some things back up here to Utah.

I do a lot in order to not feel isolated and lonely, but I think it might be an inevitable part of being disabled. I have two blogs, I have lots of friends, I try to get out every day even if its only a walk to the store or pharmacy. I try to take the bus different places. Being in CA was less isolating for the most part because I had a car and was really busy trying to both get through all the boxes in my storage unit (which I managed to do) and sort them, donate things, etc. I didn’t get to spend as much time with my kids as I would have liked because I was expending a lot of energy on the storage task, and my kids are teens now and busy doing lots of other things. Then they left on a cruise for two weeks with their dad and step mom and two step sisters. Their step mom graciously asked me to dog sit/house sit for them so that I could also have a place to go through my storage.

I was good for about 10 days, I thought. I knew I was beginning to struggle, but I also didn’t want to have to spend much on gas, as it just seemed like a good idea, and as I was having huge struggles with my step mom who (it seems) seems to think I could just throw away everything. Anyway, I’m trying to get over my anger on how she dealt with it.

So for over a week I sorted and sorted and filled more than half a city owned residential recycling trash can with paper and plastic. I was pretty proud of myself. It also felt very cleansing. I started out my divorce with enough stuff to fill a 10×10 storage unit, and over the years it’s gone down and down, depending on where I’ve lived.

In some places I didn’t need a storage unit. I have most of the family photos that were taken prior to 1980 when my mom passed away. My sister has never had room for them and my brother….I dunno, he probably could have kept them. I’ve been kind of the “family historian” since I took a class on it in college and majored in history and have made it a hobby to know about family history preservation. Anyway, the storage unit fit into my monthly allowance and I’ve economized on purpose so that I could keep it. When I moved from CA to UT, I got to Utah via a ride with my older sister’s family to my niece and little sister graduating from college. I couldn’t bring much. I still don’t have much stuff here. When I moved from one apartment to the next, everyone helping out kept saying, “that’s all??”  Didn’t take very long to move me.

phone-160428_640So I’m getting off topic. But it does relate. I was so focused on the storage unit that I didn’t do much else other than go to the pharmacy and grocery store. Then around day 10 of my time dog-sitting a huge wave of depression came in. I don’t get that depressed very often: more often it’s the bad anxiety. It was very very deep, though. The positive side was that eventually I realized it was happening and remembered that I could probably at least call friends and try to talk it out. I think being away from my doctor and therapist for that long (6 weeks) was probably also not a good idea for me at this time, but getting to be with my kids was. The day before they got back the depression started to lift. The phone calls helped a lot. Doesn’t hurt that one of my friends is a therapist. I try not to “use” him for that, but he’s gracious enough to help if I need it. Sometimes my therapist isn’t feeling well herself due to a prior injury from a car accident, and (such is life, she can’t change it…) sometimes I really need to talk to someone when she’s not doing well.

So, the end of my 6 week stay was really really nice. I got to spend a lot of time with my kids. They and the rest of the group told me all about their cruise and vacation and showed me photos and videos. We spent time with some of my friends on one of my last nights, and then wandered around a farmer’s market. It was exactly what I needed.

So, coming home was nice (it’s home) but leaving my kids again is always hard. I’m realizing how isolated I am here a lot of the time, too. I keep hoping that after my disability hearing that I’ll be able to get a used car. Sometimes I think about it too much, I think. It was so much easier in CA to not be discouraged a lot of the time because even if I was tired I could just get in the car to run my errand or get where I was going. My fatigue doesn’t have to be a 10/10 to make it difficult to take the bus sometimes to get where I’m going.  Upside of the bus? I love watching everything go by and being able to remember a lot of what I see, which is more difficult in a car. I also love to walk distances, so walking from the stop to my destination is kind of an adventure, even if I’ve done it dozens of times. I always see something new. Downside again: if I’m fatigued, it can be really difficult. Dora

I feel like I could do so much more if I could just get out from under needing my parents’ help. I found out today that even after the disability hearing, a decision could take 1-4 months. I’m so tired of dealing with my sm and her impatience. It’s a miracle she’s “let” my dad help in the first place, so I’m grateful for that, but I can’t wait for this all to be over. I don’t even want to think about the possibility of being denied. If the judge could spend a week living with me and seeing what my health is like, I don’t think I’d have any trouble. I wish that it wasn’t so complicated, but it is. It could take a full three years from the time I applied to when the decision is finally made.

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Missing things.

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disappointmentThe past two weeks have been very eventful. I think they’ve been way more positive than negative, even if my PTSD symptoms seem to have a mind of their own. I’ve been able to make it to the most important events of the two weeks with one glaring exception: my son’s high school graduation was a Tuesday evening followed by my daughter’s middle school graduation on a Wednesday morning. So, guess what I missed? Yup, the middle school graduation. I don’t think it was good emotionally for either my daughter or for me. I think my Facebook post will sum it up the best:

Slightly personal. One of the joys of having PTSD: (and no, I won’t tell you where I got it from): I had a good time at (son’s) graduation, but it was a very large, happy (good thing) noisy crowd. I was happy but a bit of a shaking mess by the end. (Daughter’s) Middle School graduation was this morning. I could wake up, but I was semi-paralyzed and could hardly move or speak. I managed a text that I wasn’t doing well, then I missed her graduation. These are the times when having PTSD really stinks the most. I slept for several more hours, having nightmares about trying to get to (daughter’s) promotion. There is no way I can take it back. Then a certain family member was giving me a hard time about having gone to (son’s) graduation instead of Libby’s. Because, you know, as a Mom I always want to make choices like that, and I’m omniscient about consequences. It’s now 3:30 and the tremors still haven’t completely gone away, and I’m still struggling to speak. And (daughter) didn’t have her mom at her graduation.

Mental illnesses aren’t different from physical illnesses in this way. Oh, because wait…mental illnesses ARE physical ilnesses! There’s this weird misconception, which is probably understandable, that because they’re “mental” that people who have them haven’t done the intense mental and physical struggling to try to be everywhere they want and need to be. Just like everyone else, I have to miss things that I want to get to go to more than anything else. I miss things that I didn’t want to go to, and I feel bad about that too! Basically, I have to constantly work on the shame and guilt and good guilt and bad guilt of all the places I both want to go to and don’t want to go to. And some of the things I don’t want to go to are easier to go to (some meetings, for instance) than things I want to go to (I can’t currently do any movies in theaters….how’s that for fun…you want to go there?)  But missing my daughter’s graduation takes the cake. For the rest of my life, this will be one of those things that I remember with much more frustration than having to miss a bunch of movies in theaters for a couple of years, or however long it ends up lasting. I can’t make it up. So, my daughter was really understanding. She was upset and disappointed. It was one of those things that incites a combination of feelings. I can’t get into her head and tell you everything that went on, but I can tell you what I know from what she told me and other family members. I can tell you what it was like when I was lying in my bed with most of my body stuck there and not wanting to move, and my head wanting to believe that it was 1am instead of 8 or 9 am, and wishing that someone could stick me on a stretcher or at least offer me a Skype session of it. I’m trying to work on my anger with people who don’t understand. With the people I don’t know very well, it’s not an issue. With a couple of family members, it bothers me and I do take it personally at times. Then I talk it out with a friend or my therapist and the forgiveness comes back. In the meantime, I’m grateful I wasn’t able to slug the person who suggested that I somehow could have made it. I could have, probably, had I missed my son’s graduation. He was in a graduating class of over 1,000 students. How do you decide not to try to make it to that? I had done okay for the few days prior, so I was  praying that I’d make both. I had made it to his Baccalaureate and my daughter’s awards assembly. It’s so easy online to see the enormous evidence of how much we all judge others based on 20/20 vision and hindsight. I’m the one who is going to spend the rest of my life knowing that I missed my daughter’s 8th grade promotion. Everyone can….I want to use words that I shouldn’t. I love my family and I love my daughter and I’m going to make it past this somehow. The rest of you who are mostly healthy and get to go to both the things you want to and most of the things you don’t…..think about your health. Don’t make it to everything you want to? Welcome to the lives of everyone else on the planet. And I was touched by how many people understood how I was feeling and reached out to both me and my daughter. And this post ended up long, about just one thing, so I guess I’ll move on to another post for the rest. For what it’s worth. I have way more blessings than I have disappointments. At the very least, I believe this phrase that I heard once, “The sorrows may outnumber the joys, but the joys will outweigh the sorrows.”  My blessings here on my trip to CA have far outweighed the sorrows, despite the frustration of missing my daughter’s promotion. And I kept myself from swearing (slightly swearing) over the subject. 😛

Rock Band and PTSD. Yup.

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Rockband-drumsetI don’t know that I ever would have guessed this, but someone at church started providing their Rock Band game during our weekly volleyball/game night, and I can’t think of a better way to say this: it kicks my anxiety’s bu*t! Every week after playing, my anxiety is practically gone, enough so that after just the first week I was thinking, “If I get disability and my disability back pay, I’m going to buy Rock Band!” Can you imagine my recovery? “Take one hour of Rock Band drums, vocals, and a little guitar a day, and your anxiety level will be low enough to get rid of at least half of your PTSD symptoms…..”  I don’t know if it would be as dramatic as that, but it’s been a long time since I’ve found anything that made that much of a difference, aside from time with friends and my therapist and doctor.

I’ve been singing my whole life. I have a minor in music, I’ve conducted several church choirs and got to conduct my college choir once out of a stroke of luck (and maybe some hard work, but there was luck involved), and growing up my favorite thing to do at home was to sit at the piano and play and sing. For some reason it’s not the stress reliever now that it once was. If I get to help out by accompanying our church choir when my hands aren’t shaking too much, I really enjoy it, even though I get excited when the better piano  player shows up.  I like to be able to be helpful, but I prefer the other person. When singing, I love to get to sight-read the hard parts. I’ve been able to sing, on and off, in more rigorous community choirs over the past years since college, but sometimes after a semester or two (what they call it, even though they’re not college choirs) if my anxiety levels get too high again, it gets to be an anxiety producer instead of an anxiety-buster. One strange thing about anxiety is that something that is helpful can turn into too much.audio-2202_640

In the most recent large choir I was in, it could be the level of the noise (even if beautiful) or the mood of the director or a sudden burst of claustrophobia with so many people in the room (or a combination of all of it) that would get to me. I’d be doing breathing or inner meditation exercises, but my hands would start to shake harder and I’d start to get dizzy and suddenly I’m overwhelmed too much to stay in the room. The most recent choir directors didn’t like us to sit down, but sometimes I’d sit anyway, because….health issues. But I still felt like a failure. I felt comfortable discussing it with the choir president, but I wasn’t sure that the directors would think it was such a good idea for me to be there, and eventually it got to be too much, so that I knew it was too much, too. So choir, the thing that helped me keep my sanity through my first two years of college, had to go again. I couldn’t sing in choir my junior and senior years of college, either, which is a very long story in and of itself. And yes, it was anxiety/fatigue. One of the hardest times of my life, when it all became serious.

So in the same way that Rutter, Fauré, Mozart, and John Jacob Niles helped me in college: it looks like Queen, Bon Jovi, Green Day and Pat Benatar may help me out of my current funk. When I’m around others, I tend to have a sense of humor and joke around a lot: but when I’m at home, I seem to be too serious, and perhaps more my “over-thinking” self. It’s so exciting to find things that work, no matter how odd it may seem. Rock Band’s drums seem to be especially effective.  They just make me happy, even if I get a terrible score. 🙂  I can live with this!

Exercise, a healthy diet, and…..Rock Band.

On that note, the FODMAP diet has been helping, but true again to my over-thinking nature, I get to where I worry about it and then my stomach hurts from the worry, and not just from what I eat. My therapist and doctor both smiled and said that was really common. The cherry on top of that info? My new primary care doctor (new insurance) has IBS as well! I was hit with a feeling of peace when she told me and I knew that she understood.

cooking-chocolate-674508_640So my stomach was bothering me a LOT yesterday. On the 1-10 pain scale, I was probably at a 6 or 7. I had some paperwork that I had to finish though, so I had to get on the bus and get back to the library to print some things out. So, what did I do? I forgot the notebook with the information in it that I needed to log into the website where I needed to print out the forms. I tried to make myself feel a little better by checking out a couple of library books. I then called several friends to see if they could help me out. The situation was getting a little ridiculous. I have had a ton of paperwork to do lately, but three weeks of bus rides just to get it done was frustrating me, because it feels like I haven’t gotten much of anything else done during the day.

On the way home, I knew it was getting time for dinner, and I just didn’t want to eat anything. It came to my mind my favorite treat that is allowed on my diet, but that I try not to eat too often, a Lindt Intense Mint bar. I thought, “I could eat one of those,” and suddenly my stomach pain was gone. Completely gone. Like that, I went from a 6 to a 0, just from the idea that I could eat one (so of course I did). I wish anxiety and physical symptoms always worked that way! (Believe me, I’ve tried….thousands of time). I was so happy that I was almost giddy.

Things to do when you’re alone on Christmas Eve…

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elf-ralphie

Unlike a lot of people with mental illnesses, I do usually have somewhere to go for Christmas and other holidays. I do get a little stressed, wondering if I’ll find a way there etc., but things usually work out.

This year, though, I got the flu. So tonight, instead of moping about how I missed my family’s festivities last night in California, I decided to put my sense of humor and other things I’ve learned over the years for just this type of thing. I may still be a bit discouraged, but overall I’m having fun with this.

What to do when you’re by yourself for Christmas Eve and Christmas, my personal version:

I could do laundry in the middle of the night! I probably won’t, but I could.
I already opened all my presents. Ha.
I can pretend I’m in France and stay up past midnight, waiting for the baby Jesus.
I can play the piano in the middle of the night. Even if I do a terrible job, no one will care.
I could work on hitting a high ‘C’ in the middle of the night. I’m afraid my neighbors would hear this one. Scratch that.
I can watch Doctor Who, in the middle of the night, with no headphones on.
(Come to think of it, it’s already past midnight in France, but that’s beside the point…)
I can clean my room in the middle of the night. (Getting over this flu! Woohoo!)
I can turn on all the lights in the whole place, just because I want to. Except my roommate’s rooms, of course.
Come to think of it, I can finally finish putting up the decorations that have been sitting out.
I can throw out my Christmas trash in the dumpsters, and they won’t be full already.
I can loudly quote the movie Elf, just for fun, all I want. (I’m kind of wishing for revolving doors, but I’m not sure that’s such a wise post-flu activity anyway.)
Once again, I can scour Netflix for Christmas movies that I haven’t seen yet. And last but not least:
I can remember all the reason why I love the people in my life who drive me crazy, and use the alone time to read and meditate on being a better person myself.

Okay, so one more. I can think about all the reasons my kids are having a good Christmas this year, and how they’re such amazing kids, and how they wish for me to get better. I will see them again. Also, I told them that I will start WWIII if they don’t Skype or call tomorrow, because that’s the type of mother with a flu I am. But I won’t really start WWIII.

And while I’ve been making this list, I keep thinking, “I think I should go back to bed…..” But hey, if I wake up in the middle of the night….